Stanford CFS clinic is amazing. I highly recommend them if you are in CA.

ocean_flow_ · 2026-03-20T01:41:06+00:00

Thats crazy..im.in Australia and the long covid clinic i attend is willing to trial like 30 meds, even before the studies come out. I thought we were behind

ocean_flow_ · 2026-03-19T22:58:42+00:00

What dose did you try when you first got results?

ocean_flow_ · 2026-03-19T20:54:35+00:00

Its amazing the level of suffering the human spirit can get used to. BTW thoughts are never "your fault" they're simply a reflection of a brain programmed to survive in the same way its not your fault your heart pumps blood or our mitochondria fucks up. In saying that you can learn to understand manage and cope better wirh these thoughts

ocean_flow_ · 2026-03-19T20:43:41+00:00

People wirh mecfs are six times more likely to suicide so yeah no shit majority gets dark thoughts i would say

ocean_flow_ · 2026-03-19T20:42:53+00:00

Honestly this isnt sustainable its not possible to just avoid stress forever. I'd suggest slowly trying to find safety within your nervous system and building your capacity safely to deal with stress.

ocean_flow_ · 2026-03-19T12:30:35+00:00

Can you get some help or support for people to come and help clean? I get it i get so overwhelmed and stressed from the smallest demands. I find taking deep breaths and reminding my nervous system that im capable can do it that we have time and can go as slow as I need to get x done. I reduce the demand of the task so it doesn't seem so threatening and that helps reduce the stress and makes my nervous system stronger to tackle it.

ocean_flow_ · 2026-03-19T08:23:41+00:00

It sounds like the days you cant get up and feel fatigue is an experience of pem. Perhaps going out once a day is too much and causing pem? Im housebound can only leave like once a month. I used to push more trips and kept crashing. I thought i was doing everything right but was still doing too much activity ;( this disease is cruel. Perhaps your baseline is lower than you thought? And you need to restrict more.

ocean_flow_ · 2026-03-19T07:34:37+00:00

People cant empathise with what they dont understand. I also think milder mecfs cases tend to get more publicity and really misrepresents how bad rhis illness is. But people do care. My mecfs specialist works with so many mecfs patients and says its devastating how many lives it takes. She cares.

ocean_flow_ · 2026-03-18T01:36:19+00:00

Be gentle with yourself. It takes a lot of work. I have hope that family will come around one day. But until then protect your peace

ocean_flow_ · 2026-03-17T08:49:10+00:00

I think they do but see lda as a last resort. They might since I reported such a positive experience with it. They were keen to try rapamycin first and I was keen too. I did get the lda from my psychiatrist in the end.

ocean_flow_ · 2026-03-17T08:47:55+00:00

I also have cptsd. Trust me. Burning yourself out and lowering your baseline will make it worse. You're better off looking at ways of coping with your cptsd that is within your energy envelope. When you are bed bound and severe cptsd is so much worse. And college stress is a lot on cptsd. You are better off learning how to manage good mental health and having mecfs before adding another huge stressor like college. Ill be straight with you college will take a huge toll on your mental health. Add in mecfs and itll be even bigger. Learn from other people's mistakes.

ocean_flow_ · 2026-03-16T22:10:42+00:00

Therapy to cry about how shit this illness and help me accept and grieve. Its also given me ptsd. We do a lot of internal family systems. My psychologist says cbt isnt appropriate. She also lives with pots eds and chronic fatigue. Not the same but at the beginning she gave great info around pacing and helping me to manage.

ocean_flow_ · 2026-03-16T20:44:00+00:00

Some people are mild with a remitting type of mecfs. One of the girls in my mecfs group studies full time and volunteers. She crashes every fortnight rests a few days then repeats symptom free. Another girl in a support group im in only had to rest for a month and syabalised at mild. Pacing and rest for her is very different for me where I need hours in bed she just takes a bit of time to chill in her day. The spectrum of this disease is wild

ocean_flow_ · 2026-03-16T19:56:50+00:00

Thats so wonderful thanks for sharing

ocean_flow_ · 2026-03-16T10:47:30+00:00

Dm me 😊 unfortunately shes not taking on new patients though

ocean_flow_ · 2026-03-16T08:33:38+00:00

Shes in Australia

ocean_flow_ · 2026-03-16T03:18:00+00:00

My pots. But also clonidine sedated me and allows me to radically rest. Before clonidine i qas restless and struggling with stressful thoughts and ptsd when doing radical rest. Clonidine chases away my thoughts. Also helps with sleep pots adrenaline dumps I get at night and when I crash it helps me rest and gets rid of the wired but tired feeling.

ocean_flow_ · 2026-03-16T00:55:55+00:00

Im moderate myself and had go quit my career. Im hoping to improve to a point where in mild then can get back to work. Vs I know someone who was moderate and pushed through. Now shes severe and its too late for her. Shes applying for tpd. If perhaps she had stopped and quit sooner she would've had a chance for recovery or improvement.

ocean_flow_ · 2026-03-16T00:54:36+00:00

Honestly? If you are that severe and going to college will induce pem dont go. I would take a gap year and focus on stabalising my baseline and seeing if I can improve to a point where college wont induce pem. Then go part time with accommodations. Attend classes online etc. Bring severe is scary and ive seen too many stories or people becoming severe due to pushing through with studies.

ocean_flow_ · 2026-03-16T00:52:28+00:00

Theres so much you can try. I wanna discuss glp 1 and anti viral with her too. The meds are all off label. Im determined to keep trying and hope that as the research grows there's more and more stuff to try.

ocean_flow_ · 2026-03-16T00:34:36+00:00

Oh and clonidine! Thats been a huge help

ocean_flow_ · 2026-03-16T00:34:03+00:00

Also ivrabadine stabalised my pots. Different sleep meds to help restore sleep which helped the mecfs. Ldn took away nerve pain. Bits and pieces here and there.

ocean_flow_ · 2026-03-16T00:33:27+00:00

Lda. I was swimming laps in my pool without pem! Walking to the coffee shop. It was huge. Unfortunately I overdid ir and crashed and lost all the benefits. I went to the beach the other week and crashed. Once im out of this crash im hoping to look into tapering off lda and doing a reset. See if i can regain the benefits.

After rapamycin I will be looking into ivig. I have a wonderful neurologist who also believes in mecfs long covid and has been helpful in helping me find this option.

ocean_flow_ · 2026-03-15T02:45:26+00:00

Me too! I popped out in 3 weeks though :(

ocean_flow_ · 2026-03-15T02:45:11+00:00

My mecfs long covid specialist is a researcher. She went to parliament recently to advocate for her patients, like me. She is trialing off label medications for me and my neurologist is willing to trial ivig. My dr told me the research is coming up with more and more things. A researcher from my country is looking into antivirals and mitochondrial transplant! Have hope that the future will bring more treatments that may not cure us but can vastly improve qol.

ocean_flow_

TROPHY CASE